August 9, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Managed Care

For several months, VOR has been bringing attention to the problems that are likely to arise if states that adopt a program of managed care instead of fee-for-services were to extend these programs to cover people receiving long-term sevices and supports (LTSS) through Medicaid.

The article below is not about LTSS. It is not about ICFs or people with I/DD, but it is about the huge for-profit managed care plans that are taking over more and more state Medicaid systems.

In the words of Dr. James Edmondson, who spoke at our Annual Meeting in June:

"These plans are second guessing doctors left and right. They have been permitted to develop excessively rigid “step therapy” protocols in their commercial ERISA-regulated plans (ERISA really means “unregulated”), they are already using these protocols in Medicaid managed care plans, and they recently got CMS to allow them to apply their Procrustean bed to Medicare Advantage plans too."
Cancer Patients Are Being Denied Drugs, Even with Doctor Prescriptions and Good Insurance
By Carmen George, The Fresno Bee, August 2, 2019
Norma Smith was diagnosed with stage-three cancer in December.

In Smith’s case, that’s the last stage of her blood cancer, multiple myeloma, which had spread extensively.

As it attacked cells in Smith’s bone marrow, an important part of the immune system, the 62-year-old was eager to start treatments to stop it. What happened instead in the months that followed was Smith’s pharmacy denying and delaying chemotherapy treatments prescribed by Smith’s medical doctor over and over again.

Smith, a retired special education teacher in Fresno, and her husband, Rodney, a retired school psychologist and director of special education, consider their “very expensive” health insurance coverage to be “the best.”

But that insurance didn’t ensure Smith would get the drugs she needed when facing CVS Specialty Pharmacy – the pharmacy their insurance required them to use. Cancer drugs prescribed by Smith’s oncologist were denied because they didn’t follow the standard protocol sequence of medications that Smith’s pharmacy benefit manager, CVS Caremark, had in their guidelines.

That means pharmacy benefit managers have the authority to trump a doctor’s medical judgment without seeing patients or knowing their full medical history, and without accountability for the consequences of what happens to sick people.

Smith is among thousands of documented cases of patients who have been denied needed medications in this way. Doctors and other medical professionals say these denials are only expected to get worse as the country’s largest health insurance companies and pharmacies are increasingly joining forces.

These elusive middlemen with the authority to deny doctors’ prescriptions based on company policies are sometimes referred to as PBMs for short. Doctors and patients believe they are causing life-threatening problems for people like Smith.

The role PBMs play in health care is being examined in some proposed legislation related to costly pharmaceutical drugs and patients’ access to medications.

“Every time we want to make a change (to medications), we have to go through this whole process where someone – and we don’t know who it is – someone has the right and authority to override my judgment and what the patient needs,” said Smith’s oncologist, Dr. Ravi Rao, of cCare Cancer Center in Fresno, “and that person is functioning without us having a recourse to it. He can do whatever he wants, he or she, and I can’t call them and say, ‘Hey, by the way, what you’re saying doesn’t make sense,’ because they are hiding behind all these processes, and we are struggling here.”


The first cancer drug Smith received was a standard, first-tier chemotherapy medication that she was able to get relatively quickly.

Unfortunately, she had to stop taking it after a couple weeks in January because she had a life-threatening allergic reaction, including trouble breathing and a severe head-to-toe rash.

Rao recommended she be switched to another cancer drug, which was denied by the PBM. She was without needed medicine for nearly two months while her case was on “review” before receiving new medication.
As she waited, her cancer grew and her liver function deteriorated. She has a rare kind of myeloma that mainly involves her liver. She started losing a lot of weight and getting very sick.
“I wanted to shift her to a related drug that does not have that reaction, and the insurance company flatly refused; the PBM refused,” Rao said. “I spoke to someone at the PBM and they faxed me a protocol, basically saying that, ‘You do drug combination A first, you go to drug combination B, and only then will you get drug C,’ and what I was asking for was drug C. And so I told the family, ‘Well, this is their policy, so let’s go with drug combination B.’ “
By the time Smith received her second chemotherapy drug – in March – her cancer was much worse. That “drug combination B” that her pharmacy required she take next wasn’t effective.

During this time, her liver also began to fail, Rao said.

Her cancer counts were much higher than when she was first diagnosed. Myeloma cells make a protein called light chains, Rao explained, and during this time they had increased to about 3,200. A normal number for someone in remission is 20.
Rao asked again for the drug he wanted for Smith. It was approved, but only in combination with another drug he didn’t want.

“The combination that was their protocol wasn’t what I thought was right because of her deteriorating liver and kidney functions,” Rao said. “And again, that led to another few weeks of back and forth, during which time I was giving her just half the treatment I was planning on giving her.”

Rao was eventually able to get the whole treatment he wanted, but Smith had another severe reaction and had to stop taking it. She needed to be switched a third time to another drug combination.

“That combination included a drug they had authorized in January, but because I was using it in a sort of unusual combination – and that was based on clinical reasoning – that reasoning did not fit in with what they thought should be the third-line drug combination, they again said no. Then it took another week or so, and this time the patient’s husband had learned the nuances of the process. He knew who to call, so I’m pretty sure he pushed a lot of buttons there and, finally, it got authorized.”

Rodney Smith said he had to go all the way up to a top appeals board supervisor before the drugs his wife needed were approved.

The PBMs’ protocol “was used to override my clinical judgment each time,” Rao said. “Each time they said no, the patient suffered as a result, and it led to the decline in her status by the time that we got to the right treatment.”

Since Smith has been taking her newest medications, her health is distinctly better.

Smith said it “took practically an act of God” to get the medications her doctor wanted. She credits the persistence and knowledge of her husband and doctor in keeping her from dying earlier this year. She knows many other cancer patients aren’t as fortunate.

State News:
Louisiana Picks Companies for Medicaid Managed Care Deals
By Melinda Deslatte , Associated Press - Shreveport Times, August 5, 2019

Four companies have been chosen to manage the care of 1.7 million Louisiana Medicaid patients starting next year, winning multibillion-dollar deals that are among the most lucrative in state government.

Louisiana's health department announced Monday that the contracts will go to AmeriHealth Caritas Louisiana, Community Care Health Plan of Louisiana, Humana Health Benefit Plan of Louisiana, and United Healthcare Community Plan. All but Humana currently hold Medicaid managed care contracts with the state.

Terms of the new deals, which are supposed to begin in January, remain to be negotiated with Gov. John Bel Edwards' administration.

Louisiana contracts with managed care companies to oversee services provided to 90 percent of its Medicaid recipients.

The state pays a per-member, per-month fee for each person enrolled in a health plan with the companies — mostly adults covered by Medicaid expansion, pregnant women and children. The enrollees get services through a network of primary care doctors, specialists and hospitals.

Asked what set the four winning contractors apart from Aetna and Louisiana Healthcare connections, health department spokesman agency spokesman Robert Johannessen said he couldn't comment beyond the announcement.

Former Gov. Bobby Jindal's administration moved to the insurance-based model for much of the Medicaid program in 2012, shifting from a previous system of directly reimbursing doctors and hospitals with a fee paid for each service rendered to a Medicaid patient. The managed care contracts annually account for roughly one-quarter of the state's operating budget.

Critics have panned the existing contracts as doing too little to ensure proper spending and improved health outcomes in Louisiana's $13 billion Medicaid program. The Edwards administration has pledged to make changes in the next round of contracts, saying it wants contracts aimed at improving patient care and lowering costs.

Illinois - Medicaid Managed Care Reforms Signed into Law
By Peter Hancock, Capitol News Illinois, August 5, 2019
Gov. J.B. Pritzker said Monday that people applying for Medicaid benefits in Illinois will see those applications processed more quickly, and health care providers will be paid more promptly, under a comprehensive reform bill now signed into law.“This legislation launches one of the most aggressive, cross-agency efforts in Illinois history to expand health care access and to eliminate the multi-year Medicaid backlog once and for all,” Pritzker said during a bill-signing ceremony in Chicago.

Medicaid is a publicly-funded health insurance program for low-income families, seniors and the disabled. Established in 1966, it is jointly funded by the state and federal governments and it is the largest health insurance program in Illinois, covering nearly 3 million individuals, or nearly one quarter of the state’s population.

Illinois operates its Medicaid program under what’s known as a “managed care” model. That means people who are covered by the system enroll in a plan administered by private insurance companies, known as managed care organizations, or MCOs. Those companies, in turn, are paid a flat, monthly per-person rate, which they use to pay for each person’s medical care.

In recent years, though, the Illinois program, called
HealthChoice Illinois, has been plagued with a backlog of applications from individuals trying to get into the program as well as people trying to renew their coverage.

The backlog, defined as applications that have not been processed within 45 days of their submission, peaked around 121,000 cases during former Republican Gov. Bruce Rauner’s administration and now is about 95,000.

Health care providers have also complained about slow payments from the MCOs as well as high rates of claim denials.

Senate Bill 1321, which was drafted by the bipartisan Medicaid Legislative Working Group, seeks to address both of those issues.

Among other things, it requires the Illinois Department of Healthcare and Family Services to set up a new claims clearinghouse to collect and analyze data about medical bills and to adjudicate claims. That agency will also establish a dispute resolution process and will act as the arbiter in disagreements between providers and MCOs.

Missouri - Every Year, Half Of Missouri's Workers Who Care For The Developmentally Disabled Quit
By Aviva Okeson-Haberman, KCUR 89.3 (NPR), August 7, 2019
Missouri workers providing care for adults with intellectual and developmental disabilities make less than a Walmart or Target worker, even after a pay increase that went into effect last month. 

The low pay is the main reason about half of Missouri workers quit each year, according to Missouri Developmental Disabilities Division Director Val Huhn.

Starting wages now range between $9.50 and $10.50 an hour thanks to Missouri state lawmakers appropriating $20 million more in general revenue to providers. But advocates worry this isn’t enough to address the chronic worker turnover that affects the quality of care people with intellectual and developmental disabilities receive.
“It's just devastating, not having that reliable staff,” Huhn says. “Can you imagine constantly training somebody on how to brush your teeth if you can’t do that? I mean, just you're just constantly teaching people how to help you.” 

Travis Anderson has spent about a year trying to find a personal care assistant. He’s 45, has a disability and uses a power wheelchair to get around. 
Anderson works as a receptionist and self-directs his care, meaning he hires a worker and the state pays for it. While Anderson is looking, his aunt has stepped in. But she’s almost 70 and Anderson says he’s not sure how much longer she can do this.

Every time he thinks he’s found someone to hire, there’s an issue. Sometimes they can’t work the hours. Anderson needs help getting ready in the morning and then the worker would have to come back in the evening to help him get to bed. Other times they don’t pass the criminal background check. 

Nationally, the direct support workforce has reached crisis levels, according to a 2017 report by the President’s Committee for People with Intellectual Disabilities .

“Not only does the crisis facing this workforce threaten people with intellectual disability and their families; it also undermines the stability, efficiency and ability to grow much needed long-term services and supports and, therefore, undermines the overall U.S. economy,” Jack Brandt, the committee’s chair, wrote. 

It’s been almost a year since Anderson’s aunt said she could help out for three months. Without his aunt, Anderson doesn’t know what he would do. He says his service coordinator wants him to consider going to a nursing home. 

“I don’t think I would fit very well into a nursing home,” Anderson says. “...When you envision how your life's going to be, I mean, nursing home doesn't even come up right now. But I’m really struggling to find good staff.”

Arizona - Disability Workers Suing AZ For Failure to Pay Wages
By Hannah Critchfield, Phoenix New Times, August 8, 2019
On her first day of work, Kimberly Spitler was handed the lives of 84 people. Spitler was no stranger to working with people with developmental disabilities, but as a former behavioral health advocate within the Arizona public schools, she knew providing adequate care took time. " Is this possible?" Spitler remembers thinking.

During the late hours she’d spend away from her family over the next three years, Spitler learned all too well it was no mistake. It was her caseload from her new employer, the state of Arizona.

Spitler, who's 48, is just one of a group of state developmental disability case workers who say their burgeoning caseloads have cost them much, and compensated them little. Now, Spitler is suing the state of Arizona on behalf of herself and all other people who are similarly situated for unlawfully failing to pay overtime wages.

“A lot of people don't have the funds to pursue a case on their own,” she said. “Or, they're so busy working their job that they just can't.”

The complaint filed on June 25 asks the court to recognize that the state has unjustly profited by denying its employees pay, violating the federal Fair Labor Standards Act and Arizona Wage Statute, which both mandate overtime pay for hourly employees. It alleges that wage theft was willful, interfered with caseworkers' lives, and impeded long-term investment in an agency that serves some of the state's most vulnerable citizens.

Spitler started her job as an hourly caseworker with the Developmental Disabilities Division (DDD) of Arizona’s Department of Economic Security in November 2017. The division provides a range of health care to developmentally disabled adults and children under the Arizona Long Term Care System, an Arizona Medicaid program that works to provide affordable care to disabled individuals.
Like her coworkers, Spitler works with people of all ages who have autism, cerebral palsy, epilepsy, or cognitive or intellectual disabilities — including children under the age of 6 who are at risk of developing a disability.
Case workers who aid individuals with developmental disabilities in Arizona, commonly referred to as "support coordinators," are paid hourly. They’re full-time employees, entitled to 40 hours of work and overtime pay for any hours worked beyond that.

Spitler said the problem arises with case assignments: Case managers employed by the DDD are not supposed to have a caseload larger than 40 clients at a time, according to the Arizona Health Care Cost Containment System’s (AHCCCS) Medical Policy Manual. But Spitler alleges she and other caseworkers regularly have more than 80 clients at once.

“The responsibility that we have for the people that we're serving, it's important to us — none of us want to drop the ball, so we do what we have to do,” Spitler said. “But we've just been very short-staffed for quite a long time.”

Spitler’s particular unit at the DDD could hire up to eight caseworkers. She said that since she started, the most they’ve ever had is five. Amidst these shortages, existing caseworkers have to make up the difference. Spitler currently has 76 people in her caseload — the second-lowest amount it’s ever been.

With heavier caseloads came the longer hours. The complaint alleges that in order to complete work on their regular cases, caseworkers regularly worked 60 to 70 hours a week. Lunches were skipped, weekend leisure was cut, work would start early and resume after family dinner into the late hours of the night.

But workers did not receive compensation for this work, the complaint says.

Oregon - OR Department of Justice Broadens Review of Nonprofit for Adults with Developmental Disabilities
By Brad Schmidt, The Oregonian, August 2, 2019
The Oregon Department of Justice this week broadened its review into several related nonprofits that provide services to adults with developmental disabilities in response to reporting by The Oregonian/OregonLive.

An assistant for Attorney General Ellen Rosenblum formally requested records involving potential conflicts of interest, payments to family members and company officers, and the flow of money between the businesses.

The official request comes three months after the newsroom spotlighted the interweaving of family and financial interests within Alternative Services-Oregon. The state has not launched a formal investigation, and the Tigard-based nonprofit faces no allegations of wrongdoing.

Alternative Services-Oregon is part of a broader network guided by Michigan businessman Arthur Mack, who launched nonprofits for people with developmental disabilities in Michigan, Connecticut, Maine, Oregon and North Carolina.
Five relatives of Alternative Services-Oregon’s executive director, Pat Allen-Sleeman, have worked for or contracted with the local nonprofit, earning about $2.4 million over five years, records show. Mack and another board officer personally own four properties in Oregon they lease to the nonprofit for more than $100,000 annually, the newsroom found.

Representatives for Alternative Services-Oregon previously said the board ensured that interested parties were walled off from decisions that affected them, and that company conflict-of-interest polices were followed.

Prompted by The Oregonian/OregonLive’s reporting, state charity regulators reviewed publicly available tax filings for Alternative Services-Oregon and its related nonprofits before asking for more records.

Massachusetts - DDS Group Home Provider Acknowledges Multiple Clients Missed Dozens of Medical Appointments
By Dave Kassel, The COFAR Blog, August 6, 2019
In the wake of a series of allegations identified by COFAR of poor care of a group home resident, the president and CEO of the nonprofit group home provider has acknowledged missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences.

The provider, the Center for Human Development (CHD), is funded by the state Department of Developmental Services (DDS). DDS relicensed CHD in 2017 after issuing a licensure report that did not appear to address those managerial problems.

In an August 1 statement provided to COFAR, James Goodwin, CHD’s CEO and president, said his organization has verified that eight clients in two of its group homes missed a total of 59 medical and dental appointments since 2015.

Goodwin said the missed appointments included primary care visits, specialty care visits, and eye and dental exams, and were “a result of failures to adhere to policies in two homes…” He said it was “important to note that clients continued receiving prescription medications during this time, so many appointments were being kept.”

“We can’t comment on the specifics of an individual’s care,” Goodwin’s statement added. “We have identified instances of failures to follow protocols and isolated instances of inappropriate use of financial resources. All funds have been fully reimbursed. We acknowledge the need for improvement in oversight and strengthening of policies, and improvement in communications with family members and guardians, and we have taken substantial steps to make those improvements.”

Foster mother detailed a series of care problems

Goodwin’s statements were in response to a July 15 COFAR blog post, which detailed a series of problems with the care of Timothy Cheeks, a 41-year-old man with Down syndrome who lives in a group home managed by CHD in East Longmeadow .

Since late last year, Tim’s foster mother and guardian, Mary Phaneuf, has raised issues with CHD and DDS regarding Tim’s care at the residence including:

  • A lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years;

  • No documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect;

  • A lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years;

  • No documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect;

  • A failure to treat Tim for two years for back pain and a degenerative back problem, and to fill a prescription for pain medication for him;

  • A failure to ensure that Tim was receiving Social Security benefits for at least two years;

  • The unexplained removal of Tim from his day program run by the Work Opportunity Center (WOC) in Agawam without informing Mary of that fact. (Phaneuf first discovered and raised this issue with CHD in 2017);

  • The diversion of food stamp benefits for Tim and at least one other resident of a CHD group home; and

  • Erroneous information listed in Tim’s 2018 Individual Support Plan (ISP), including an untrue statement that Tim had visited a primary care physician in September of that year. The doctor listed had apparently not seen Tim since 2011.

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the department’s website did not mention those or similar problems in the agency’s group homes.

Goodwin said that immediately upon discovering the “failures in the program” in early January, CHD began making “extensive reviews of and changes to policies, increasing oversight and documentation of clients’ medical care and adding additional safeguards against individual failures to adhere to protocols.”

DDS Commissioner Jane Ryder has not commented on the matter.

VOR Bill Watch:
Click on blue link to view information about the bill

On August 6, 2019, President Donald Trump signed the renewal of
Money Follows the Person
under the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019
(Public Law No: 116-39)


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).


H.R. 3253 & S ??? - Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 - This bill would authorize nearly two billion dollars over four years for the Money Follows the Person Demonstration Program. SIGNED INTO LAW, August 6, 2019 ( Public Law No: 116-39)

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.
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